Breathing has not been this easy in far too long. Making the trip to Texas was quite possibly the best decision since Poppy’s birth.
Meeting Dr. Fearon was delightful. He is kind, compassionate, animated, honest, and reminded me very slightly of Gene Wilder as Willy Wonka – in speech, not appearance.
I learned more about Apert Syndrome, I shared my questions and fears, I listened intently to all of the GOOD news he offered, and I was granted something more precious than gold – time to breathe.
While some of his offerings were still hard to hear and added a small dusting of fear atop an already weighty blanket – I walked away feeling for the first time in her whole life, perfectly calm.
All of the things I’ve been asking about and fighting for here in Portland from her doctors (sleep study, breathing tests, etc.) were right on. Perhaps the biggest and most generous gift of all was Dr.
Fearon’s word to personally respond to, and correspond with her medical team here. This in itself is the reason I pushed and shoved my way through the negative comments and nay-sayers and made Texas my number one priority. This is why I spent countless hours sobbing on the phone to get her in to see this doctor. This is why me and my village of friends and family hauled Christmas trees to sell, baked cookies, and spread the word about Poppy.
Dr. Fearon said she will have ten beautiful fingers, no problem.
He did say that her cranial surgery was done too soon and she will need another one before her third birthday. He also said that she needs tubes in her ears because she is likely hearing as if under water due to built up fluid caused by narrowed drainage tubes.
He said that the seizure episodes may not have been seizures but could have been caused by reflux and/or the extra fluid in her ears. While certainly not conclusive, any offer of an alternative to seizures is welcome news.
So now, I breathe and enjoy my children. I come up with creative and fun ways to raise $60k.
Most importantly, I know in my heart that I am doing everything possible to ensure Poppy has the best care and the best quality of life. I know that my decision was the right one and even though it seemed impossible – I got her there. I did that (with the help of all of you).
I have so much more to share from our trip, but I will leave you with this for now.